Re: I'm so angry, confused & overwhelmed

[Guest guest]

Hi Kate

Ask the doctor why the methotrexate. That it frightens you. You can get

other opinions.

But this is what I suspect. The doctor may want to slowly wean you off the

prednisone, sometimes methotrexate helps that process. ASk the doctor if this

is the case. Bring in articles about your concerns. Remember you are the

boss!!

Much Love

Liz

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Hi Kate

Ask the doctor why the methotrexate. That it frightens you. You can get

other opinions.

But this is what I suspect. The doctor may want to slowly wean you off the

prednisone, sometimes methotrexate helps that process. ASk the doctor if this

is the case. Bring in articles about your concerns. Remember you are the

boss!!

Much Love

Liz

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

Hi ,

I'm 22 years old and was diagnosed after being hospitalized for

almost two months. I had every syptom of Still't imaginable and

could not even move. They started me off on 120 mg's of prednisone

and I stayed that way for a month. When I got diagnosed my dr told me

that in order to ween me off the prednisone they would have to put me

on methotrexate for maybe a year and when I got off of it, I would

have a good chance of never having a flare again.

That was before he realized that I would not get better as he

thought. Everytime they tried to lower my prednisone I got worse. I

still have many syptoms such as muscle pain, rashes, fevers, joint

pain, fluid around heart and lungs, anima, and extream fatigue, I

also have fibromylagla. I am now on prednisone 30mg,

methotrxate,humira and gabaptin, plus meds for the pain. When I got

diagnosed I was upset cause also on the still's website it said that

having a child could cause a flare and though I don't plan on having

one anytime soon, it scared me. I have had to give up a lot of things

in my life and choose the things I want to do. But I accepted that I

am sick and that I may be sick forever. I have no idea when or if

this will go into remission. But I do know that I am more grown up,

positive and stronger for it. I know the things I want out of life

and know that I can do them if I plan for them. I make a lot of lists

plan each day out, and am more organized.

I know I am not a doctor, but you seem like you have a really good

chance of living a life with one flare, especially since you were so

easily helped with prednisone. My dr in Casper where I live said the

cases that are controled with prednisone are less sever then the case

I had. I hope this helps, I know you are scared I was too. But I also

know that if you stress out and work yourself up it makes it worse. I

would just relax, your life isn't over cause you have still's. You

have a family a little baby that needs you. And a life to live.

Please don't get upset but what I said. I just know that my mom had

m.s. and was very very ill and could not barley move let alone walk

for about 5 years, and one day she decided she was going to walk

again, by helself she worked out and now she just walks with a cain.

She raised three kids by helself almost very ill and now she works

full time. See, if you think positive you never know what will happen.

again I hope things work out, and your not so scared. I think

everything will be okay.

Please stay positive,

Mandy (Wyoming)

[Guest guest]

Hi ,

I'm 22 years old and was diagnosed after being hospitalized for

almost two months. I had every syptom of Still't imaginable and

could not even move. They started me off on 120 mg's of prednisone

and I stayed that way for a month. When I got diagnosed my dr told me

that in order to ween me off the prednisone they would have to put me

on methotrexate for maybe a year and when I got off of it, I would

have a good chance of never having a flare again.

That was before he realized that I would not get better as he

thought. Everytime they tried to lower my prednisone I got worse. I

still have many syptoms such as muscle pain, rashes, fevers, joint

pain, fluid around heart and lungs, anima, and extream fatigue, I

also have fibromylagla. I am now on prednisone 30mg,

methotrxate,humira and gabaptin, plus meds for the pain. When I got

diagnosed I was upset cause also on the still's website it said that

having a child could cause a flare and though I don't plan on having

one anytime soon, it scared me. I have had to give up a lot of things

in my life and choose the things I want to do. But I accepted that I

am sick and that I may be sick forever. I have no idea when or if

this will go into remission. But I do know that I am more grown up,

positive and stronger for it. I know the things I want out of life

and know that I can do them if I plan for them. I make a lot of lists

plan each day out, and am more organized.

I know I am not a doctor, but you seem like you have a really good

chance of living a life with one flare, especially since you were so

easily helped with prednisone. My dr in Casper where I live said the

cases that are controled with prednisone are less sever then the case

I had. I hope this helps, I know you are scared I was too. But I also

know that if you stress out and work yourself up it makes it worse. I

would just relax, your life isn't over cause you have still's. You

have a family a little baby that needs you. And a life to live.

Please don't get upset but what I said. I just know that my mom had

m.s. and was very very ill and could not barley move let alone walk

for about 5 years, and one day she decided she was going to walk

again, by helself she worked out and now she just walks with a cain.

She raised three kids by helself almost very ill and now she works

full time. See, if you think positive you never know what will happen.

again I hope things work out, and your not so scared. I think

everything will be okay.

Please stay positive,

Mandy (Wyoming)

[Guest guest]

Hi ,

I'm 22 years old and was diagnosed after being hospitalized for

almost two months. I had every syptom of Still't imaginable and

could not even move. They started me off on 120 mg's of prednisone

and I stayed that way for a month. When I got diagnosed my dr told me

that in order to ween me off the prednisone they would have to put me

on methotrexate for maybe a year and when I got off of it, I would

have a good chance of never having a flare again.

That was before he realized that I would not get better as he

thought. Everytime they tried to lower my prednisone I got worse. I

still have many syptoms such as muscle pain, rashes, fevers, joint

pain, fluid around heart and lungs, anima, and extream fatigue, I

also have fibromylagla. I am now on prednisone 30mg,

methotrxate,humira and gabaptin, plus meds for the pain. When I got

diagnosed I was upset cause also on the still's website it said that

having a child could cause a flare and though I don't plan on having

one anytime soon, it scared me. I have had to give up a lot of things

in my life and choose the things I want to do. But I accepted that I

am sick and that I may be sick forever. I have no idea when or if

this will go into remission. But I do know that I am more grown up,

positive and stronger for it. I know the things I want out of life

and know that I can do them if I plan for them. I make a lot of lists

plan each day out, and am more organized.

I know I am not a doctor, but you seem like you have a really good

chance of living a life with one flare, especially since you were so

easily helped with prednisone. My dr in Casper where I live said the

cases that are controled with prednisone are less sever then the case

I had. I hope this helps, I know you are scared I was too. But I also

know that if you stress out and work yourself up it makes it worse. I

would just relax, your life isn't over cause you have still's. You

have a family a little baby that needs you. And a life to live.

Please don't get upset but what I said. I just know that my mom had

m.s. and was very very ill and could not barley move let alone walk

for about 5 years, and one day she decided she was going to walk

again, by helself she worked out and now she just walks with a cain.

She raised three kids by helself almost very ill and now she works

full time. See, if you think positive you never know what will happen.

again I hope things work out, and your not so scared. I think

everything will be okay.

Please stay positive,

Mandy (Wyoming)

[Guest guest]

Dear Fluffyn,

1st I would like to welcome your to the Stills site. As a fellow Stills patient

I can share with you the problems of the disease. You are walking down the same

road most of us had to walk. Some very hyard calls to make. Your Doctor is you

guide and you will learn to know what works for you. I was abletowork with My

Rummy and primary care Doctors and they taught me how to go with the flow , so

to speak. I also was on 30 mg predisone for a long time and as I felt better

the dose was lowered alittle aaaat a time. after 2 years I find I have a hard

time if I go below 5 mg perday. I need the methotrixate in shot form at .7ml per

week. as well as a shot of Kineret daily and folic acid, calcium w/d so - on....

this works for me. I was off of work for aa year and now back with caution. I

say caution because if I get stressed I start feeling strange and will start

shaking and hit a fever in no time flat. Learning my limits is a task that

always comes up short. I want to get more done, I can no longer do that, I am

stoped cause the low level quiver internal to my system is warning me to slow

down. If I do not slow down there is a problem.

Learn your Body all over again ,,, very hard ,, very frustrating, but learn you

must, you will be able to cope better and do some cool things. The Methotrixate

I need and have been taking it for a;most two years . a low dose and it helps me

I know. with out it my meds do not work as well for as long as I need them on a

daily base. I found the more I learned the more I could not figure out this

Stills disease....only after acepting the facts to slow down and take my meds I

was able to return to work.

Again this works for me, you are very different, being female that is, and you

do pose very good questions. I think your on the wright track to finding what

works for you. Please keep your Doctor in the loop..PS some of the anti oxidents

can cancel the effects of the meds...do your research..

Alan......

I'm so angry, confused & overwhelmed

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.org: " For example, if the patient is considering a

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?

[Guest guest]

Dear Fluffyn,

1st I would like to welcome your to the Stills site. As a fellow Stills patient

I can share with you the problems of the disease. You are walking down the same

road most of us had to walk. Some very hyard calls to make. Your Doctor is you

guide and you will learn to know what works for you. I was abletowork with My

Rummy and primary care Doctors and they taught me how to go with the flow , so

to speak. I also was on 30 mg predisone for a long time and as I felt better

the dose was lowered alittle aaaat a time. after 2 years I find I have a hard

time if I go below 5 mg perday. I need the methotrixate in shot form at .7ml per

week. as well as a shot of Kineret daily and folic acid, calcium w/d so - on....

this works for me. I was off of work for aa year and now back with caution. I

say caution because if I get stressed I start feeling strange and will start

shaking and hit a fever in no time flat. Learning my limits is a task that

always comes up short. I want to get more done, I can no longer do that, I am

stoped cause the low level quiver internal to my system is warning me to slow

down. If I do not slow down there is a problem.

Learn your Body all over again ,,, very hard ,, very frustrating, but learn you

must, you will be able to cope better and do some cool things. The Methotrixate

I need and have been taking it for a;most two years . a low dose and it helps me

I know. with out it my meds do not work as well for as long as I need them on a

daily base. I found the more I learned the more I could not figure out this

Stills disease....only after acepting the facts to slow down and take my meds I

was able to return to work.

Again this works for me, you are very different, being female that is, and you

do pose very good questions. I think your on the wright track to finding what

works for you. Please keep your Doctor in the loop..PS some of the anti oxidents

can cancel the effects of the meds...do your research..

Alan......

I'm so angry, confused & overwhelmed

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.org: " For example, if the patient is considering a

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?

[Guest guest]

Dear Fluffyn,

1st I would like to welcome your to the Stills site. As a fellow Stills patient

I can share with you the problems of the disease. You are walking down the same

road most of us had to walk. Some very hyard calls to make. Your Doctor is you

guide and you will learn to know what works for you. I was abletowork with My

Rummy and primary care Doctors and they taught me how to go with the flow , so

to speak. I also was on 30 mg predisone for a long time and as I felt better

the dose was lowered alittle aaaat a time. after 2 years I find I have a hard

time if I go below 5 mg perday. I need the methotrixate in shot form at .7ml per

week. as well as a shot of Kineret daily and folic acid, calcium w/d so - on....

this works for me. I was off of work for aa year and now back with caution. I

say caution because if I get stressed I start feeling strange and will start

shaking and hit a fever in no time flat. Learning my limits is a task that

always comes up short. I want to get more done, I can no longer do that, I am

stoped cause the low level quiver internal to my system is warning me to slow

down. If I do not slow down there is a problem.

Learn your Body all over again ,,, very hard ,, very frustrating, but learn you

must, you will be able to cope better and do some cool things. The Methotrixate

I need and have been taking it for a;most two years . a low dose and it helps me

I know. with out it my meds do not work as well for as long as I need them on a

daily base. I found the more I learned the more I could not figure out this

Stills disease....only after acepting the facts to slow down and take my meds I

was able to return to work.

Again this works for me, you are very different, being female that is, and you

do pose very good questions. I think your on the wright track to finding what

works for you. Please keep your Doctor in the loop..PS some of the anti oxidents

can cancel the effects of the meds...do your research..

Alan......

I'm so angry, confused & overwhelmed

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.org: " For example, if the patient is considering a

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?

[Guest guest]

Fluffyn,

Stop researching for a few minutes. You are scarring yourself to death.To

get a better idea of your individual prognosis you need to speak with your RD.

Yes, this problem is lifelong, and yes for some it can be severely disabling.

Some people win at the lottery too - but not all, and only small a portion of

those hit it big. Nobody can say what thier future holds, even if they are

healthy.

There are many here who lead fun and fulfilling lives. Sure some have to

plan more carefully than others, and some take more meds than another. Yet there

are also those who go into remission for years. Who knows, maybe you will have

lighter symptoms than most. If not, you have found a group that will listen and

support you when times get bad. The group can give you tips and communicate

personal experiences - I assure you, you are not and will not be alone while you

are active in this group.

So tell us, what is your condition today? Is it improving? Personally I

have been diagnosed for over 30 years. A doctor once told me I would be in a

wheelchair before I was 20. Although I do exercise caution and try not to do

things that are rough on my joints like contact sports, I am active in the

outdoors and have been most of my life. I am currently a graduate student well

over 20 years of age, and only in the past year have I had to give up working

carpentry (which is not really a loss to me anyway).

I still experience joy - just now it is in a different form. I write

instead of go rock climbing. I am a little more cautious when I garden - but I

still garden. As far as planning stuff goes - how frequently can you just jump

up and leave work to go on a vacation anyway? If your supervisor allows less

than 2 weeks notice for a vacation - I want to work for them.

My point is that it is not likely that it will constantly be as bad as it

seems to you now. Slow down, take some time for yourself, speak with your

friends here and allow yourself time to adjust before you get stressed by some

great unknown. Trust me, your body will thank you for it.

Keeping you in my prayers,

fluffyn wrote:

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. ...So now I am

actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! ...So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

Recent Activity

2

New Members

Visit Your Group

Yahoo! Health

Achy Joint?

Common arthritis

myths debunked.

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Best of Y! Groups

Discover groups

that are the best

of their class.

.

[Guest guest]

Fluffyn,

Stop researching for a few minutes. You are scarring yourself to death.To

get a better idea of your individual prognosis you need to speak with your RD.

Yes, this problem is lifelong, and yes for some it can be severely disabling.

Some people win at the lottery too - but not all, and only small a portion of

those hit it big. Nobody can say what thier future holds, even if they are

healthy.

There are many here who lead fun and fulfilling lives. Sure some have to

plan more carefully than others, and some take more meds than another. Yet there

are also those who go into remission for years. Who knows, maybe you will have

lighter symptoms than most. If not, you have found a group that will listen and

support you when times get bad. The group can give you tips and communicate

personal experiences - I assure you, you are not and will not be alone while you

are active in this group.

So tell us, what is your condition today? Is it improving? Personally I

have been diagnosed for over 30 years. A doctor once told me I would be in a

wheelchair before I was 20. Although I do exercise caution and try not to do

things that are rough on my joints like contact sports, I am active in the

outdoors and have been most of my life. I am currently a graduate student well

over 20 years of age, and only in the past year have I had to give up working

carpentry (which is not really a loss to me anyway).

I still experience joy - just now it is in a different form. I write

instead of go rock climbing. I am a little more cautious when I garden - but I

still garden. As far as planning stuff goes - how frequently can you just jump

up and leave work to go on a vacation anyway? If your supervisor allows less

than 2 weeks notice for a vacation - I want to work for them.

My point is that it is not likely that it will constantly be as bad as it

seems to you now. Slow down, take some time for yourself, speak with your

friends here and allow yourself time to adjust before you get stressed by some

great unknown. Trust me, your body will thank you for it.

Keeping you in my prayers,

fluffyn wrote:

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. ...So now I am

actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! ...So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

Recent Activity

2

New Members

Visit Your Group

Yahoo! Health

Achy Joint?

Common arthritis

myths debunked.

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Best of Y! Groups

Discover groups

that are the best

of their class.

.

[Guest guest]

Fluffyn,

Stop researching for a few minutes. You are scarring yourself to death.To

get a better idea of your individual prognosis you need to speak with your RD.

Yes, this problem is lifelong, and yes for some it can be severely disabling.

Some people win at the lottery too - but not all, and only small a portion of

those hit it big. Nobody can say what thier future holds, even if they are

healthy.

There are many here who lead fun and fulfilling lives. Sure some have to

plan more carefully than others, and some take more meds than another. Yet there

are also those who go into remission for years. Who knows, maybe you will have

lighter symptoms than most. If not, you have found a group that will listen and

support you when times get bad. The group can give you tips and communicate

personal experiences - I assure you, you are not and will not be alone while you

are active in this group.

So tell us, what is your condition today? Is it improving? Personally I

have been diagnosed for over 30 years. A doctor once told me I would be in a

wheelchair before I was 20. Although I do exercise caution and try not to do

things that are rough on my joints like contact sports, I am active in the

outdoors and have been most of my life. I am currently a graduate student well

over 20 years of age, and only in the past year have I had to give up working

carpentry (which is not really a loss to me anyway).

I still experience joy - just now it is in a different form. I write

instead of go rock climbing. I am a little more cautious when I garden - but I

still garden. As far as planning stuff goes - how frequently can you just jump

up and leave work to go on a vacation anyway? If your supervisor allows less

than 2 weeks notice for a vacation - I want to work for them.

My point is that it is not likely that it will constantly be as bad as it

seems to you now. Slow down, take some time for yourself, speak with your

friends here and allow yourself time to adjust before you get stressed by some

great unknown. Trust me, your body will thank you for it.

Keeping you in my prayers,

fluffyn wrote:

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. ...So now I am

actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! ...So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

Recent Activity

2

New Members

Visit Your Group

Yahoo! Health

Achy Joint?

Common arthritis

myths debunked.

Meditation and

Lovingkindness

A Yahoo! Group

to share and learn.

Best of Y! Groups

Discover groups

that are the best

of their class.

.

[Guest guest]

I'm with you girl in questioning why the MTX when you are feeling ok.

I know the steroids are just a band aid and the MTX is something that can

help to calm the joint damage caused by the inflammation so maybe at your next

visit you can go in armed with a list of questions for your RU and hopefully

a clear answer can be given as to why that particular course of treatment is

recommended and if you dont get answers a second opinion from another doc

could do it.

As for coping I'm new to Stills as well and when the disease was my only

problem so to speak I went through all the crying and hopelessness and then got

hit with the double whammy of the inflammation has caused permanent loss of

function and my focus now is finding the right meds to help stop further

damage. I've snapped out of my funk and have found a more positive outlook on

this so hopefully that will come to you in time.

Mandi

Florida

In a message dated 3/2/2008 5:07:26 P.M. Eastern Standard Time,

katiemoog@... writes:

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.stillsdisease.<WBR>org: " For example, if the patien

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

[Guest guest]

I'm with you girl in questioning why the MTX when you are feeling ok.

I know the steroids are just a band aid and the MTX is something that can

help to calm the joint damage caused by the inflammation so maybe at your next

visit you can go in armed with a list of questions for your RU and hopefully

a clear answer can be given as to why that particular course of treatment is

recommended and if you dont get answers a second opinion from another doc

could do it.

As for coping I'm new to Stills as well and when the disease was my only

problem so to speak I went through all the crying and hopelessness and then got

hit with the double whammy of the inflammation has caused permanent loss of

function and my focus now is finding the right meds to help stop further

damage. I've snapped out of my funk and have found a more positive outlook on

this so hopefully that will come to you in time.

Mandi

Florida

In a message dated 3/2/2008 5:07:26 P.M. Eastern Standard Time,

katiemoog@... writes:

I applogize for what is sure to be a rambling post. I'm trying to

work things out in my head. I hope you'll understand and perhaps help

me brainstorm some solutions.

I've only been dealing with this for a little under 2 months. I've

had Stills as my diagnosis since the end of January. It was a

tentative dx at first, but nothing has come up to contradict it. At

first no one said anything to me about this being a SERIOUS disease.

I was aware that it was something that would flare up frome time to

time and need to be treated, but I didn't think that I'd need

constant medications. My rheumatologist told me that I'd take

prednisone until my symptoms were under control then taper off of it.

Then at my last visit she all of a sudden wants me on mtx! This made

me so angry! All I knew about mtx was that it is a pretty powerful

drug and that I can't breasfeed while on it so I refused and told her

I wanted to talk more about it at our next visit.

So now I am actually doing the research on this disease and its

treatments (which I guess I should have done in the first place) and

it is FREAKING ME OUT! I can't live like this! From

stillsdisease.stillsdisease.<WBR>org: " For example, if the patien

vacation, the dates should be marked on a calendar well in advance so

there is ample time to pack and otherwise prepare for the trip.

Patients who prepare immediately before the trip may be too fatigued

and sore to enjoy the trip, and may initiate a flare. " So basically

I can't have any fun anymore? No more spontnaity? No more joy? I'll

leave my family before making them live like this for my sake!

And the side effects of all the medications seem worse than the

illness! I know that I am still on a pretty high dose of pred (30mg)

but I have not had any real joint pain in over 3 weeks and no other

symptoms (fever, rash, swelling, etc) in over a month. Why would I

want to start something else when I'm feeling fine? Just to prevent

another episode? Why can't we wait and see if the symptoms do come

back before starting something? I just don't understand! From

rxlist.com: " METHOTREXATE SHOULD BE USED ONLY IN ... PATIENTS WITH

PSORIASIS OR RHEUMATOID ARTHRITIS WITH SEVERE, RECALClTRANT,

DISABLING DISEASE WHICH IS NOT ADEQUATELY RESPONSIVE TO OTHER FORMS

OF THERAPY. " Is that what I have? Severe, disabling disease? It was

for a couple of weeks, but will it be forever?

So I don't know what to do when I see the doctor again on the 20th.

She insists that she is the expert and that I can trust that she

knows what is best. But why am I so skeptical? I don't like being a

difficult patient, but this just all feels WRONG to me. Am I just in

denial? Is my percieved health just an illusion caused by the

prednisone? Is being debilitatingly sick over the long-term

inevitable?

I just feel so lost. I'm sorry for ranting. I having to be positive

and upbeat IRL and I have no other outlet for my concerns. How did

you cope with diagnosis?

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)